Jana and Tom Monaco – Fighting to save lives with newborn screening

Tom Monaco ’85 (Temple) and his wife, Jana, were Pilam Temple college sweethearts who married, started a family and had a happy, healthy life. But in 2001, their seemingly healthy third child, 3-year-old Stephen, developed a life-threatening stomach virus that led to severe brain damage. Stephen was left unable to walk, talk or feed himself.

His diagnosis was a rare but treatable disease called Isovaleric Acidemia (IVA), marked by the body’s inability to metabolize an amino acid found in dietary protein. IVA is a rare condition that affects one in 250,000 children. Tom and Jana were unknowingly carriers of the disease, and at the time, IVA was not included in newborn screening. 

Their fourth child, Caroline, was tested while still in the womb. Knowing she had the mutation, doctors were able to administer medication the day she was born. This time the Monacos were prepared to monitor her diet immediately to keep her healthy.

Genetic testing, said Jana, “gave Caroline the future that Stephen didn’t get to have.”

Becoming advocates for newborn screening

Tom and Jana initially experienced parental guilt, asking themselves, was there anything we could have done differently? But after gathering more information, and talking to experts and other parents who went through this, Jana realized, “this could’ve happened to anybody.”

Through their efforts to share their story and educate others, the Monacos unexpectedly became advocates for the cause of newborn screening. 

Initially, they shared their story with the people in their community. Tom spoke at their church about Stephen’s condition, and they were approached by a fellow parishioner who worked for a regional news station. He asked for an interview which was televised.

Meanwhile, Jana was learning more and more by joining online groups and meeting with parents, doctors and other experts on the subject. 

Initially, she wanted to make a change in Virginia law so she went to a county town hall meeting to speak to state politicians. Jana said, “Everyone else was asking for money. I just stood up and told our story.”

Representative Jeff Frederick approached her after the meeting and said he wanted to help. He sponsored a 2005 bill to expand the number of conditions to be screened. The measure was passed by the Virginia legislature. 

During that time, states all had their own standards for genetic screening. When the Department of Health and Human Services formed a committee on a national policy for newborn screening, Jana was asked to present. 

She said, “I had five minutes to tell our story. I sat down right after Jim Kelly.” Buffalo Bills Hall of Fame QB Jim Kelly has a son, Hunter, who also had a rare and debilitating disease.

In 2008, the Newborn Screening Saves Lives Act passed and established national newborn screening guidelines. 33 conditions are now recommended for newborn screening in all 50 states. 

Getting support from their Pilam family

Tom and Jana both have Pilam roots. Tom was a brother and Jana was a Pilam Little Sister. The Little Sisters were an auxiliary group that some chapters had in the 80s. They were an independent organization, similar to a sorority, but they were Pilam through and through.

In 2001, Jana’s Pilam sisters stepped up to organize a beef and beer fundraiser to support the family. Pilam brothers and little sisters turned out to show their support and affection for the Monaco family.

At the 2007 Kovner Banquet, the Temple chapter’s annual celebration of Alfred “Koko” Kovner, Tom thanked his brothers for their support.

He said, “I nearly lost a 3-year old son, but what ended up happening was (his condition) left him severely medically disabled, and this house helped me step up to the plate and raise some money that helped us deal with some of the medical needs that we are continually challenged with.”

Listen to Tom’s “good and welfare” speech.

Paying it forward

Tom and Jana now host an annual fundraiser in Stephen’s name to benefit the genetics department at Children’s National Hospital, where Stephen has received excellent care. The Stephen Monaco Charity Golf Tournament has raised over $350,000 over the last seven years and it continues to grow every year.

Tom’s PA Alpha Delta brothers are regular participants who donate items for the silent auction. At the last event, Jana saw a table of Tom’s classmates. She said, “I saw ‘not four years but a lifetime’ at that table.”

All Pilam brothers are invited to attend the golf tournament this year on Oct 27th, 2023 to support the cause. Check the Facebook page for registration information, or if you would like to lend a hand financially, donate to Children’s National Hospital.

The Monaco family

Stephen still has his health struggles and the family needs to closely monitor his condition. Jana said, “We’ve learned to read him over the years.” As for the worry that comes with having a sick child she said, “you sort of learn to put it on simmer.”

Tom and Jana have four children, Nicholas, Alex, Stephen, and Caroline.

Tom served in the US Army, became a captain in the armored corps, and was a veteran of Operation Desert Storm. He is now VP and Division Manger at Applied Research Associates.

Jana currently serves on the Virginia Genetics Advisory Council. She’s also the Vice Chair of the Virginia Rare Disease Advisory Council. She advocates on the state and national level, and her advocacy has resulted in changing the mindset on rare diseases. 

Her role in changing the guidelines for newborn testing has undoubtedly saved lives and allowed countless children across the country to live healthier, normal lives. She said modestly, “we’re just doing our part to try to make sure this doesn’t happen to anyone else.”